ELSIcon2022 • Paper • June 2, 2022
Valentina Hernandez, Davinder Singh, Iftikhar Kullo, Elena De Filippis, Karen Meagher, Sara Watson, Richard Sharp, Gabriel Shaibi, Crystal Gonzalez
Community engagement is a valuable strategy to inform and enhance research that includes under-represented communities. The Sangre Por Salud - Community Advisory Board (CAB) was developed to guide genomic medicine research within a Latino-serving Federally Qualified Health Center (FQHC). The CAB meetings are organized by bilingual / bicultural staff from the FQHC and consists of patients and community members with an interest in supporting research focused on the local Latino community. This presentation will describe CAB activities and guidance as part of NHGRI’s eMERGE network, a multi-center study aimed at implementing and translating genomic medicine research into practice. Over the past 7 years, CAB discussions focused on the relevance of the research to the local community, guidance on recruitment and retention strategies, tailoring return of research results materials and messaging for participants, implications of research findings to the broader community, and dissemination of findings to both the scientific as well as local communities. The CAB’s recommendations have helped shape our consent processes, documents, and study materials as well as informed conversations with NHGRI and the broader network regarding sharing of data and samples with outside genomic laboratories. Our presentation highlights the value-added contributions of community engagement to translational genomic medicine research, in particular, the ethical and social implications of this research for participants from backgrounds that are underrepresented in genomic research. Embedding the CAB within an FQHC further amplifies its potential impact by building local capacity for supporting research across a variety of projects.